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Old 07-18-2014, 09:20 PM #4
BackwardPawn BackwardPawn is offline
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Join Date: Apr 2011
Posts: 211
10 yr Member
BackwardPawn BackwardPawn is offline
Member
 
Join Date: Apr 2011
Posts: 211
10 yr Member
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Quote:
Originally Posted by Lynn View Post
Gosh it sounds like you have had a terrible time of it! So sorry that you have been through so much.

Have you had an MRI? That would be the first thing I would be asking for, to see whether you have brain/spinal lesions, as well as a referral to a Neurologist if you don't already have one.

I just hope you can get some answers to your questions.

Because I had a Myasthenia diagnosis, they've done EMGs and eventually a thymectomy, but I thinks its been over 10 years since I've had neuroimmaging. My last blood test for Myasthenia was negative, so I'm hoping the thymectomy worked.

My current neurologist isn't quite sure what to do so I'm making an appointment for a second opinion.

The last week has been hellish. My legs have pretty much frozen up and collapsed at midpoint in my stride. It started last Friday morning. I went to my GP who didn't know what to do and my neuro didn't return my calls.

I even called the doctor I had consulted at Mayo clinic last year and told her whats going on. I got a call back and she informed me that she was revising my dx to Functional Neurological Syndrome (which is the new name for Conversion Disorder in the ICD), and wants me to come for a two week gait training program.

I finally forced myself to go swimming tonight and am very sore, but can walk normally now. I hope I don't freeze up again tonight. I don't know if whats going on is rheumatological or neurological, but I'm pretty sure now that I don't need gait training, I need to know why my muscles or joints are freezing up. Plus it was pretty distressing to have a doctor who hasn't seen you in a year tell you that you have Conversion Disorder and that basically nothing is wrong with you, after you've been struggling to walk and stumbling for a week.

I'm not sure why my GP or another doctor didn't suggest swimming to loosen up my joints, but someone on another forum told me to try it and it really helped.
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